ISSUES OF DEATH AND DYING: CULTURAL CONSIDERATIONS
It is important to remember that the following discussion about the role of culture in issues related to death and dying is not prescriptive. It is not meant to be applied universally across racial and ethnic minority groups, as there is a tremendous amount of diversity within each of these groups. Age, gender, educational level, age at immigration, immigration status, socioeconomic status, and acculturation level all contribute to this rich heterogeneity.
DELIVERING BAD NEWS AND DISCUSSING END-OF-LIFE ISSUES
Bad news has been defined as any information that would negatively affect their views of the future [119]. Unfortunately, the delivery of bad news and end-of-life planning cannot be avoided. When necessary, adhering to culturally sensitive practice can ensure patient satisfaction, as truth telling is culturally influenced. As discussed, the Western biomedical model emphasizes the full disclosure of information to allow for informed decisions [29]. This model assumes that patient autonomy is paramount and that patients want to hear a realistic assessment of their prognosis, which may not be true in all cultures [29,139,166]. For example, some Native American groups, such as the Navajos, believe that language can dictate reality and therefore outcomes [46]. Traditional Japanese cultural beliefs maintain that language has a soul of its own, referred to as kotodama, a term meaning word and soul [47]. In these cases, language is believed to be so powerful that it can dictate the course of events [47]. This is also the case in some Pacific Islander groups (e.g., Maori) who believe that words can transform the thought into reality [120]. Some who adhere to this belief may avoid talking about death and serious illnesses [48]. Others may prefer that communication be more indirect, relying on nonverbal means, inferences, and euphemisms [29]. These patients may want information but prefer that it be delivered in an indirect manner [166].
The amount of family participation is another consideration in the disclosure of bad news, particularly in collectivistic cultures. In some collectivistic cultures, the family can supersede the individual's decisions and preferences [121]. Collectivistic cultures emphasize the importance of other people and the community versus personal autonomy [49]. In one qualitative study comparing non-Hispanic whites' and Hispanics' perspectives regarding hospice care, death, and terminal prognoses, the cultural value of familism appeared to play a dominant role. Among the Hispanic participants, family members felt that it was their duty to protect the patient as well as other family members [50]. In some cultures (Hispanic/Latino, Asian Indian), telling the truth to a family member is frowned upon because they believe this can destroy a person's hope, expediting death [140,141]. This was not as common a theme among white participants. In another qualitative study that focused on the perspectives of oncologists working with immigrant families and patients, oncologists stated that the families were the biggest barrier to "truthful" communication [121]. Some participants indicated that family members would attempt to "ambush" or "catch" the doctor before they had a chance to speak to the patient [121]. Similarly, in Chinese cultures, especially those adhering to Confucian principles, strict truth-telling goes against the cultural value of striving toward family harmony and the belief that the family knows best [140]. In some cases, family members may serve as interpreters. When this occurs, family members are put in the position of delivering bad news. Some providers choose family interpreters because they feel that family will be in a better position of knowing the patient's needs [169]. However, it raises serious ethical and professionals issues.
Practitioners may feel torn between upholding Western ethics of autonomy and respecting the desires of the family members and being culturally sensitive [121]. Again, keep in mind that the cultural values underpinning the concepts of patient autonomy and collectivism will guide decisions regarding the delivery of bad news and discussions of death and dying. Assumptions should not be made based on a dichotomous categorization.
All cultures attribute specific meanings and significance to death and dying, and these meanings are influenced by the group's religious, philosophical, and cultural belief systems. Although it is beyond the scope of this course to provide a comprehensive discussion of all of the beliefs of racial and ethnic minority groups, this section will provide a very broad overview based on a sampling of various cultural groups.
Many Hispanic cultures normalize death as part of the course of life and part of God's will (fatalism) [142]. In Mexican culture, death is often portrayed in art, literature, and history, leading some to claim that Mexicans have a "cultural familiarity with death" [51]. In Hispanic cultures, familismo plays a prominent role in the remaining life of the patient. All individuals who are considered family members, including children, have a place in the dying process [122]. Family members often come from afar and drop their day-to-day responsibilities to be with the patient [122].
For African Americans, there is tremendous diversity in views about death depending upon individuals' religious affiliations. For example, African Americans with a Baptist tradition generally believe in heaven as an afterlife where the deceased will see God [51]. Some African Americans believe cremation inhibits entry into heaven [170]. A growing number of African Americans are Muslim, and Muslim tradition emphasizes spiritual progression in the afterlife.
The concept of death for Native Americans is defined by beliefs regarding balance and harmony. In many Native American traditions, the worlds of the living and the dead are not separate but are believed to exist simultaneously. The bodies of the deceased help the earth to produce new life, thereby extending the cycle of life [52]. In a qualitative study with 27 participants from the Creek tribe, the individuals described transitions as being circular—not beginnings or finalities [52]. According to this belief system, death is an essential part of the cycle of life. However, not all Native American groups hold these same beliefs [53].
Chinese views about death are influenced by Confucianism, Taoism, traditional Chinese medicine, and Buddhism [54]. Similarly, Japanese views of death are influenced by Shintoism, Confucianism, and Buddhism. In general, death is considered a taboo topic and to talk about death is to potentially bring about misfortune [27]. In Chinese and Japanese cultures, the soul is believed to remain in the body after death [123]. This belief informs various traditions surrounding death. For example, in Japan, after the physician officially declares the death, the nurses clean the body and apply makeup to the face of the deceased. A "seeing-off ceremony" involving the physicians, nurses, and family members is then done during the transfer of the body to the mortuary [123]. Similarly, Hmongs believe that the soul of the deceased individual requires help transitioning to the next life. Shamans, funeral singers, and soul guides may be invited to assist in this endeavor [163].
The Chinese adhere to specific rules regarding treatment of the dead that reflect back to principles of propriety and filial piety. This includes ancestor worship, which consists of surviving family members honoring the dead by performing certain rituals (e.g., bringing and burning food and paper money at gravesites during an annual holiday to commemorate the dead) [27]. Ancestor worship rituals perpetuate the bond between the living and the dead [54]. Some Chinese individuals adhere to "memorial piety," or demonstration of remembrance through ancestor worship [171]. Not adhering to these traditions can cause displeasure among the ancestors and result in bad luck. This belief is partially an extension of the Chinese belief in evil spirits or qi (i.e., the flow of energy, in this case bad energy) [55]. In many Asian cultures, the ghosts of the dead can cause bad luck, ill health, or even death, as early deaths are considered the result of evil or angered spirits [55]. Widows are considered bad luck, and during the first year of mourning, they are expected not to join in weddings, birthdays, and other celebrations [124].
THE NOTION OF A GOOD DEATH
The concept of a good death is prevalent in many cultures and is reflective of societal views about both a good life and a good death [172]. These beliefs influence treatment and end-of-life care decisions. From a Western perspective, patients who die with dignity, pain-free, and with an opportunity to communicate openly with family members and make decisions regarding end-of-life care are believed to have had a good death [56,125]. This is the underlying notion of Western palliative care [172]. In one study, older patients defined a good death as having family and friends by their bedside and having advance knowledge of their imminent death [143]. This conception of a "good death," in which one controls the activities and environment, is congruent with Western values of individualism [144].
Although many racial and ethnic minority groups share similar definitions to Western views of a good death, there are some cultural variations. For African Americans, the concept of a good death is dependent on the amount of control an individual has over his/her dying process and the amount of closure in his/her life [57]. Spirituality and religion are paramount in many African Americans' lives, and African American focus group participants stated that the deceased having a relationship with their Lord is a defining dimension of a good death [126]. In a systematic review, African Americans and Hispanics identified spiritual support as key to a good death [164]. Koreans have a specific term, ho sang, meaning good death or blessed death, used to describe death following a long and a prosperous life [58]. One study of older Korean individuals found that they defined a good death as having the following components [59,173]:
Having their children outlive them
Dying with their children around them
Having lived life without being a burden to their children
Fulfilling their parental duties
Dying without pain
Completing the natural order of life
Being prepared for death
These components clearly reflect the Asian cultural values of filial piety and family. In a qualitative study of Chinese cancer patients in Hong Kong, participants defined a good death to include positive relationships with family members, control of one's life and symptoms/pain, and acceptance and awareness of death [60]. Additional factors that contribute to a good death in Chinese cultures include good relationships with family, independence, positive mental status, and physical and environmental comfort prior to death [125].
The death of a child, regardless of how old, is a tremendous crisis to families. It can bring into question the order of life and trigger unique family dynamics [126]. The challenge to processing this grief lies in constructing meaning of the traumatic event and integrating the loss. Again, it is impossible to provide a comprehensive cultural analysis, as variations exist within cultural groups.
The Chinese have a saying that black hair should not precede white hair. In other words, the death of a child should not occur before the death of a parent, because, among other reasons, this would prevent the child from fulfilling obligations of filial piety [145]. Similarly, the Korean culture has an adage that when a parent or spouse dies, one buries them underground, but when a child dies, they are buried in the loved one's heart [61]. In many cultures, the death of a child is viewed as bad luck caused by evil spirits, perhaps as punishment for some past misdeed [27,55]. Many traditional Chinese families will not hold a burial or funeral for children in part because the death of a child is considered a bad death (i.e., shameful) and because the hierarchal family roles dictate deceased children should not be worshipped by adult living family members [62,124]. If one is held, it is not elaborate, and parents and grandparents are not expected to attend because their presence could bring about more misfortunes [62]. In these cases, only children, accompanied by their parents to watch and supervise them, will be present; it is not customary for elders to pay their respects to children [63]. In some cases, children will precede the coffin while the older generation follows, with the parents at the end [63]. Cultural norms dictate that parents should not overly mourn the death of their children, as this goes against the hierarchal order [145].
In Puerto Rican families, a child who dies is dressed in white as a symbol of innocence [170]. For Catholic families, a novena (a type of worship held over nine days with special prayers asking for forgiveness) may not be needed because the child is considered free of sin [170]. Attendants at these services wear lighter colors rather than black [170]. In Native American cultures, some tribes do not name an infant until after his/her first year, in part due to historically high infant mortality rates. In other traditions, the name of the child may be changed to confuse the spirits, preventing them from making the child ill. Many Native Americans believe that when an infant or young child dies, the child will be reincarnated in another family through another birth [38].
To many people, death is considered a major life event, in some cases the last, and is marked as such by rites of passage. A rite of passage consists of a series of cultural practices that help transition a group or an individual from one phase of life to another [44]. Rituals are practiced as a group or as an individual, and they often have strong symbolic meaning [44]. Neimeyer, Prigerson, and Davies state that rituals "serve both integrative and regulatory goals by providing a structure for the emotional chaos of grief, conferring a symbolic order on events, and facilitating the construction of shared meanings among members of the family, community, or even nation" [64]. During a time of crisis and grief, rituals can be healing and provide structure to chaos [174]. Rituals help to acknowledge a change in status, serve as a mechanism to deal with feelings of powerlessness, and maintain a connection to the person who has passed [146; 147; 174; 175]. These behaviors are not always rational, as they involve a high degree of emotion and sensory stimulation [175]. Rituals also bring people together to mourn and enhance relationships [148]. Five factors common to funerals or death rituals across all cultures are [127]:
Symbols that convey culture, trigger emotions, and help recognize the deceased
Gathered community to offer support to those left behind
Ritual action to bring everyone together but also help them to move on with their loss
Connection to heritage
Transition of the corpse
Death rituals have order and meaning, but there are other components of these rituals that may be confusing and difficult to explain [63]. It is this incomprehensible dimension that allows for expressions of grief that are consistent with the group's cultural belief system. Understanding death rituals of various cultural groups provides a glimpse into how groups give meaning to life and death [65]. Rituals also provide insight regarding the role of surviving family members in relation to their family, community, and the deceased. Death rituals assist mourners to make the transition to their new identity (e.g., husband to widower) [175]. All of this is influenced by cultural value and belief systems and religion [65].
In Hispanic culture, death rituals are influenced by Catholicism and cultural norms. There is a preference for burials versus cremation, novenas (religious devotion through prayer, usually for nine days), lighting of candles for the deceased for a period of time, and a Mass said for the deceased during the first year and annually thereafter [51,66,176]. Elaborate wakes and large extended family gatherings are common, with food and many family members [176]. Loud wailing is common among the women, but men remain more stoic, conforming to Hispanic cultural values of machismo[51,66].
African American death rituals vary widely as a function of religious affiliation and geographic region. In general, the funeral often involves a large gathering of family and friends to pay respect to the deceased. They are also viewed as "home-going" celebrations, and therefore, the mood is not necessarily somber [177]. In the past, African Americans in the South had a viewing of the deceased in the house before the funeral, but this has largely been abandoned [51]. In some cases, "flower girls" (actually adult women) may walk with the pallbearers during the funeral procession. In Afro-Caribbean cultures, open caskets are common. Laying of hands and touching are common gestures of communicating one's grief [146]. Food is served and memories are shared [146]. In Haiti, funeral and death rituals have elements of Catholicism and Vodou, stemming from Haitian history and West African diaspora resulting from slavery [177].
Death rituals among Native American tribes are also diverse. In one study, 27 Muscogee Creeks were interviewed about their death ritual practices [67]. Sixteen of the participants indicated that the body of the deceased was not left alone until the burial, because the spirit is believed to remain on Earth for four days. During this four-day period, it is believed that the deceased person's spirit visits the different places he/she lived on earth. Family members and friends may leave favorite items and food in the casket, so the spirit will be well provided for during the journey to the afterlife. Other Native American groups place the deceased's belongings in the casket or destroy them, so the spirit does not return looking for his/her things [38].
In Chinese culture, it is important that the soul of the deceased travels safely, with adequate provisions for the afterlife. After the funeral, it is common to light incense, burn paper money, and have a whole chicken and wine placed at the gravesite [145]. It is believed that the deceased should be provided for, which reflects cultural beliefs about filial piety [27]. After the burial, a meal is offered and attendees are invited to partake as a token of the family's appreciation [148]. The Chinese emphasize the importance of following the customs of death rituals properly as a reflection of one's respect for a parent or elderly relative [68]. The Qingming Festival is a holiday in the spring during which families visit cemeteries to sweep the tombs of their family members, bring food and flowers, and burn incense [178].
Similarly, the Japanese bring "incense money" (koden) to funerals [69]. Survivors place money in an envelope labeled with their name, and the family of the deceased keeps a careful record of who brings koden. Approximately 49 days later, a gift is reciprocated to the donor. In this way, social networks and bonds are reinforced and family members have a clear sense of communal attachment [69]. Throughout the year, rituals are performed in order to connect with the deceased and to provide comfort to the living, particularly the elderly [149].
For Asian Indian Hindus, cremation is common; burials are contrary to cultural belief systems. Hindu adults who pass away are cremated, and this process is considered necessary purification. Hindu children have not fully developed and have not become impure, and therefore, they do not need to undergo the purification rites after death [70]. Traditionally, male relatives will attend the cremation, and the oldest son will light the fire for the cremation ritual. (Women are not permitted to attend.) The mourning period generally lasts 10 to 16 days. During this time, the family is perceived to be tainted, and friends and distant relatives do not visit [70].
MOURNING, GRIEF, AND BEREAVEMENT
Mourning has been defined as specific cultural norms, behaviors, or practices associated with the sorrow or grief experienced by family members and friends of the deceased, while grief is the affective and cognitive experience resulting from loss [71]. The period of mourning and grief following a loss is referred to as bereavement, and this period varies from individual to individual and from culture to culture [72].
As described, Western culture views grief and bereavement as time-limited in part because death is viewed as a finality. According to the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), two weeks are given before a diagnosis of depression may be made [138]. However, in some cultures, there continues to be a bond between the deceased and family members. When a culture has an extended death ritual, it conveys the belief that the bereavement process is not easy or quick [44]. Rather than relying solely on a model that espouses "closure" and "moving on," an alternative model of mourning that emphasizes a continuing bond with the deceased may be more appropriate [73]. Instead of letting go of the representation, memories, and/or events associated with the deceased, family members may continue to integrate, identify with, and create bonds with objects that serve as a representation of the deceased [74,178]. This process is not time-limited nor is it considered pathologic. This model appears to be more consistent with cultural norms among many racial and ethnic minority groups.
In Asian cultures, ancestor worship helps to maintain a bond with the deceased, and family members will regularly burn offerings to the deceased. In the Chinese tradition of han san (which translates to "walking the mountain"), family members visit the cemetery annually and bring food and paper money to continue providing for the deceased in the afterlife [27]. In a study of 10 Chinese parents who had lost a child, the majority indicated they kept a photo of their deceased child in their home to share memories with friends and family members; some burned incense near the photo [62].
Many South Asian Muslims participate in elaborate death ritual over three days that involves bathing the body, reciting the Quran, holding a funeral, and following specific procedures and processes for the burial [128]. There are also specific holidays, such as Ramadan and Eid, during which the deceased are remembered [128].
African Americans also emphasize an ongoing connectedness or bond with the deceased despite the end of their physical presence [68]. In a study comparing African American and white college students who had experienced bereavement, African Americans reported a closer bond with the deceased compared with their white counterparts [68]. The African American students reported they sought out certain activities to remind themselves of the deceased or had conversations with the deceased.
Continuing the bonds with the deceased is also a part of Hispanic/Latino cultures. Storytelling, keepsakes, religious rituals, and pictures may be used to remember lost loved ones [75]. Cooking favorite food items of the deceased on the Día de los Muertos (the Day of the Dead) and using a certain flower to tempt the spirit of the deceased back home are cultural practices designed to stay connected with the deceased.
It is important not to adhere to cultural generalizations. While many collectivistic cultures emphasize the continuation of bonds with the deceased, there are subgroups (e.g., Wahabi Muslims) who argue that death is part of God's will [128]. Consequently, this subgroup discourages ritualized mourning. Some argue that this tradition has less to do with cultural beliefs and is more due to economic pressures [128].
Expressions of grief and bereavement also vary from culture to culture. In Chinese tradition, wailing and weeping at a funeral are common. Family members and friends wear black or plain-colored clothing at the funeral and for a period of time after. During the grieving period, other happy celebrations, such as weddings and birthdays, are avoided [62]. In Vietnamese culture, the vocal expression of grief and the number of mourners is equated with the level of importance of the deceased [76]. Because of this, mourners may be hired to join in funeral processions. Instead of black, white is the color of death in the Vietnamese culture. Close family members wear simple white apparel, and guests may be given white headbands to wear [76]. In Chinese culture, the bereaved wear mourning apparel of different colors, signifying the relationship to the deceased [148]. However, public expression of emotion (including crying) is taboo in Chinese culture, especially among Taiwanese communities. In these groups, suppressing emotions is believed to facilitate the transition to the afterlife, as the deceased will not feel burdened to remain with the living [179].
In African American culture, explicit outward demonstrations of emotion are common, particularly among women and children who identify as Southern Baptists or are recent African immigrants [77]. This practice has been called "falling out" and is a culture-bound syndrome recognized in the DSM-5 as a dissociative experience involving fainting and emotional distress [77].
In some cultures, grieving is not as public. Many Native American and aboriginal people view outward expressions of grief to be inappropriate. Some may consult with traditional healers, while others use sharing circles [78]. In the United States, non-Hispanic whites tend to grieve with less display of emotion [129].
Advance directives, living wills, and other documents detailing an individual's wishes regarding care are deliberate processes designed to allow the individual to control end-of-life decisions, such as life-sustaining interventions, or to designate a proxy to make these decisions in the event of incapacitation [79]. In the United States, the Patient Self-Determination Act (PSDA) requires that hospitals, nursing homes, and other healthcare facilities provide information about advance directives to adult patients [80]. The goal of the PSDA is to increase individuals' control and autonomy in making informed decisions and obtaining the care they desire [80].
Western institutions, such as the PSDA and advance directives, are based on the beliefs that autonomy and individualism are desirable, truth telling is important, and individuals should have control over their deaths [80]. However, these assumptions are not universally accepted and may be culturally dissonant with the belief systems of non-Western groups. This is reflected in the different practices worldwide. In countries such as India, advance directives are not recognized as valid legal documents, while in other countries, like Turkey, advance directives are formally recognized but not uniformly followed [79]. In some cultures, avoidance of talk about death makes advance directive use impractical, as conversations about advance planning could be considered a personal affront or an assault on the person's well-being [79,81]. Instead, language should promote harmony and positivity. For some Native American groups, advance directives are considered a violation of tribal belief systems [46].
There is some evidence that specific ethnic minority groups are less familiar with or have more misconceptions about advance directives compared with whites. For example, in a study of 112 Korean American and 105 white elders, only 5% of the Korean Americans had advance directives compared with 59% of their white counterparts [82]. In this study, it was not necessarily lack of knowledge that contributed to the disparity. Rather, Korean culture's adherence to family involvement in decision making was identified as a major barrier.
In a study with three groups of Japanese individuals (i.e., English-speaking Japanese Americans, Japanese-speaking Japanese Americans, and Japanese living in Japan), there were no significant differences among the groups in terms of having discussed advance directives with their physicians [83]. In addition, they all preferred a group decision-making model, conforming to Asian values emphasizing the collective. In a study with elderly Chinese patients, participants were resistant to the idea of advanced directives. They did not see a necessity for formal advanced directives as family are expected to intercede [180].
In one study, Hispanics were less likely to complete advance directives compared with white Americans [130]. For some, religious beliefs can be a barrier to setting up advance directives. If one believes that God has ultimate control, actively planning one's death will feel incongruent [150]. In qualitative interviews with ethnic minorities, Hispanic participants indicated that they did not want to sign advance directive forms for fear of deportation [131]. O'Mara and Zborovskaya assert that healthcare providers are in a unique position to help educate Hispanic/Latino patients about advance directives by taking advantage of the cultural value of jerarquismo, which emphasizes respect for hierarchy [142].
Compared with White Americans, African Americans are also less likely to plan for end of life and use advance directives [84,132]. In one study, white participants were more likely to identify benefits of end-of-life planning, while African Americans were more likely to identify barriers [132]. Although advance directives, living wills, and power of attorney directives are less common, African Americans tend to choose more aggressive lifesaving interventions than whites [85]. While they are less likely to rely on formal written advanced directive documents, they are more likely to discuss end-of-life issues and planning with family members. Consequently, end-of-life planning for African Americans are more family-oriented, informal, and collectivistic [181].
Some speculate that African Americans' experiences with institutional oppression, racism, and discrimination play a role in these trends. Examples of medical abuses (e.g., the Tuskegee experiment) may make African Americans more likely to aggressively protect themselves, which manifests as taking steps to prolong life. Experiences of oppression, which are rooted in slavery and the Jim Crow laws, may result in African Americans being fearful of giving up control, particularly to those representing the dominant culture [86]. As with the sociopolitical backdrop of oppression in African American culture, some immigrant and refugee groups who have been politically persecuted and exploited in their home countries may be wary of signing legal documents [87]. Among these groups, advance directives are often viewed with skepticism.
Another factor in the non-adoption of advance directives is the role of religiosity and spirituality. Some have suggested that the disparity of advance directive use between whites and African Americans may be related to differences in beliefs regarding God's role in controlling life and death. Furthermore, cultural values about individualism/collectivism and future/present orientation appear to influence older individuals. In one study, older White individuals spoke more often about individualism/self-reliance and tended to have a future orientation while their older African American counterparts, who focused on collectivism/interconnectedness and tended to have a present orientation [132].
Palliative care is the noncurative care provided to terminally ill patients to relieve symptoms and improve quality of life [88]. The goal of palliative care is to not only meet patients' physical needs but also address their psychologic, social, religious/spiritual, and cultural needs [89]. Even across cultures, there appear to be common denominators for effective palliative care. In an analysis of studies on palliative care in various ethnic/racial minority groups, researchers found common cultural themes that cut across all groups in the area of palliative care [90]. These included:
Pain management
Support to achieve closure (i.e., resolve social and emotional concerns that are hindering well-being)
Spiritual and religious care
Support to family and friends
Focus on the quality of life
The priorities set by patients and healthcare professionals were considered carefully in the structuring of clinical practice guidelines for high-quality palliative care developed by the National Consensus Project for Quality Palliative Care. These guidelines are organized according to eight domains [91]:
Structure and process of care
Physical aspects
Psychologic and psychiatric aspects
Social aspects
Spiritual, religious, and existential aspects
Cultural aspects
Care of the imminently dying patient
Ethical and legal aspects
In its proposed national framework for palliative and hospice care, the National Quality Forum set forth 38 preferred practices based on these eight domains [91]. Of these preferred practices, six refer directly to the spiritual and cultural care of the dying patient (Table 2).
PREFERRED PRACTICES FOR PALLIATIVE AND HOSPICE CARE RELATED TO SPIRITUAL AND CULTURAL DOMAINS
|
At the end of life, palliative care is delivered most effectively through hospice, and the use of hospice care has been increasing in the United States [92]. Despite these trends, hospice/palliative care remains underused, particularly among racial and ethnic minorities. For example, fewer than 9% of hospice care recipients are African Americans [93].
The National Hospice and Palliative Care Organization, which provides data on patterns of hospice and palliative care service use in the United States, estimates that 1.55 million Medicare patients received services from hospice in 2018 [94]. The majority (82%) were white, 8.2% were African American, 6.7% were Hispanic, 1.8% were Asian, and 0.4% were Native American. These disparities exist for many reasons, including significant differences in values among cultural groups. As with much of Westernized health care, the values underlying palliative care are based on the ethical notions of autonomy, informed consent, and capacity, which may be culturally dissonant to many groups [88].
Many African Americans perceive the use of hospice care as giving up, and given their experiences with adversity, this is considered weak and unacceptable [93,126]. In focus groups, African American participants disclosed that hospice meant "imminent death," "giving up," and a place for family members to "come and watch you die" [126].
African Americans also tend to have extensive social networks, including family, church, and the community, that they historically rely on in times of crisis [95]. Similarly, Asian Americans and immigrants have strong cultural values regarding the role of the family at the end of life. As a result of this cultural emphasis, many view hospice as a form of abandonment of the sick and dying. Hospice is often considered a sign that family members are unable to fulfill their responsibilities of filial piety, which is shameful [96]. Like other Asian groups, Asian Indians tend to prefer for terminally ill family to die at home in order to ensure a good death. The Hindu culture has many end-of-life rituals that are performed by family members; dying at home is more conducive to this process [70]. However, because much of hospice care is now delivered to patients at home, it may become a more desirable option to these groups in the future.
In a focus group study of Mexican Americans, participants indicated providing medical care for the terminally ill was the responsibility of the family and that the family should assist the patient to die with dignity [97]. Many participants also stressed the importance of having priests available at the end of life, as Catholicism is a significant aspect of most traditional Mexican and Latino families.
In many Asian families, the responsibility of care is believed to be the responsibility of the family. Providers can respect this belief by assuming the role of educator. For example, a nurse can instruct family members how to safely change the patient's positioning [135].
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